Life presents us all with challenges. How we meet these both makes and marks our character. For Ann, challenge came in the form of chronic fatigue syndrome (CFS). This complex and as yet incurable illness is also known as myalgic encephalomyelitis. It affects each of its sufferers differently. All, however, experience a deeply debilitating fatigue which is nothing like typical tiredness. Ann describes this as
that sense of always moving through mud with a slow and energy depleted body.
It is like running on empty all the time, she explains.
Rest is more a matter of not using any more energy rather than trying to recover it.
Ann's illness affects her mind too. This, she says,
often feels as if it is shrouded by thick fog. Coherent thoughts can be difficult, as can concentration. The frustrations of feeling this way are obvious. What is less clear is how to deal with it as it persists year after year.
Learning to live with an invisible illness
When I first became ill I had the familiar mindset that had served me well in previous times of illness, Ann says.
Find a treatment, gradually get better and pick up the threads of life again. My attitude has changed as gradually all the familiar ways in which I lived my life felt as if they were being stripped away. I found I needed to live much more in the present moment, as making any plans even for the next hour could be so unpredictable, let alone anything in the future.
The invisibility of her illness has also been difficult for Ann. As with most sufferers, she does not appear to be sick.
Most of the time I look reasonably well and seem to be managing my life, she explains.
But what goes on behind-the-scenes is hidden. It is hard to tell people that a long phone call or a coffee with a friend can often send me to bed for the afternoon.
Confronting hostile opinions
Learning to live with the physical impacts of her illness is one thing. Yet like all who live with CFS, Ann has also had to confront the opinions of others.
One of the hardest things has been dealing with the attitude which I so often come across from other people who find it hard to accept that this really is an illness, and not a psychological quirk or attention-seeking behaviour, she says.
Understanding and acceptance of this illness may have improved over the years. Yet a certain stigma is still attached to CFS. There is no test to show a person has it. For some, that is enough to argue that the illness doesn't exist. Such people, including some doctors, can be sceptical and even hostile toward those living with CFS. They add a further burden to those already wrestling with the effects of the illness. It is a disheartening situation. Reflecting on this, Ann comments,
I wish they understood the reality of this illness and that it is not neurosis or hypochondria.
Struggling with self worth
Accusations that people with CFS are neurotic, faking or just lazy can be hard to deal with. Even more distressing, however, are the negative beliefs some sufferers may hold toward themselves. Ann acknowledges this problem when she observes,
I almost felt ashamed at times that I had succumbed to this strange condition.
The loss of her ability to earn an income and to contribute to society in ways she believed validated her as a person, caused Ann significant challenges to her sense of self worth. She has been fortunate, however, to have had the ongoing support of family and friends. These are people who, as Ann says,
accept the validity of this illness, who have some sense of what it is like to live with, and who make no judgement.
Not all people living with CFS are this blessed. Instead, many confront the challenges of the illness alone. The inability to share one's experience and receive affirmation from others can be very damaging, as Ann is well aware. She is grateful for the
deep honesty that exists with her family and friends.
Without them I would feel very isolated, she says.
Ann describes her sixteen years with this illness as an
experience of great learning. Her ability to appreciate life in this way is no matter of chance. Rather, it has been carefully nurtured over time.
It took quite a while for me to reach a place of acceptance and a new way of living with the illness and not in spite of it, she says.
I have learned that no matter how ill, how poor, or how old one is, there is always kindness – to oneself and to others.
Much of Ann's story reflects the experience of others. What makes her so exceptional is her philosophical outlook. It is not easy to view the devastating and disabling effects of CFS with such gentleness and grace. Ann's capacity to do so is a testament both to her spirit and her resilience. Her attitude is one to which many of us might aspire.
It has taken me 'slow time' to understand that contributing takes many forms, she says.
Even in the slowest and simplest life, I am a worthwhile part of the whole. It is who we are that matters and not so much what we do.
International ME/CFS Awareness Day is on 12 May.
For more information about ME/CFS, go to http://www.mecfs-vic.org.au.
Or visit the Better Health Channel Website